How good are you at playing "bite your tongue" when someone says something about your cancer?

JustGrateful

I'm talking about people that are close to you, like an in-law, brother, sister, mom, dad, but one of those that you really don't want to release the flying monkeys on? My MIL is very opinionated and she tends to push her opinions on me about my cancer, which she knows nothing about but pretends to be a world-renowned doctor. I literally have bitten my tongue and walked away. How do you handle the difficult ones?

LiveWithCancer

There are some things just not worth dealing with. Lots of things, really. My mom, when I told her I was going to stop treatment after continuously getting it for over 6 years, decided I just didn't ever really have stage 4 lung cancer. Okay..... I guess all of those scans and biopsies were someone else's...

If I recall, I think I either said, "Maybe so." or "No, there's proof I have cancer." and went on to something else - like her own health, a favorite topic of hers.

For the most part, I've been fortunate enough to not get too much bad or unsolicited advice. But, when I do, I tend to try to get off of that subject and onto something else pretty fast. I know (and they probably know) that I am almost certainly not going to take their "advice."

Would it be possible to tell the MIL that you just prefer not to discuss your cancer?

Dawsonsmom

I have the exact opposite experience with people talking about my cancer. No one ever mentions it and neither do I. At times this can feel very surreal but given what others have told me about their experiences with “advice”, I’ll take the silence.

Teachertina

Seems like everyone around me just wants to pretend that if they don’t talk about it, it will just not be true and it will all go away and be just fine. Deep denial! I don’t bring it up unless I have news they don’t want to hear. Fortunately I am doing great, so everyone is happy!

legaljen1969

Not just with cancer, but my mother is very much this way with almost everything. She is always finding "articles I thought you might be interested in reading." And I can say with certainty that at least half of them end up in my deleted items folder. As I would get information from my doctors, I would share it with her. I would tell her "this is what I know about MY cancer." I decided early on that I wasn't going to be a cancer sponge and read up on every single thing and give myself anxiety any worse than I have on any other given day. You can read all the worst case scenarios and either feel scared or feel fortunate when they don't happen.

My mother had so many questions and I didn't have so many answers. I really needed for my mother to hear the information at the same time I heard it so she could process too. We didn't have a great relationship for many years. I was really anticipating her hovering and being overbearing so I had prepared my doctor for her "arrival." The first thing my doctor told me was that she was not scared of my mother and if I needed her to do so, she would be happy to keep the flow of information minimal. I had one particular day where I was to see my surgeon, my medical oncologist and radiation oncologist all on the same day (New Years Eve. LOL). She came with me to all of the appointments. Once she met them all, she knew I was in good hands. The entire experience become much easier and we could talk more freely.

I have had a little of all of the experiences mentioned by @LiveWithCancer, @Dawsonsmom, and @Teachertina.

Because my journey has been relatively short-lived from diagnosis to surgery and starting on Hormone therapy, it has seemed very surreal and there are people who have asked me if it was even real. Yes, I have a mastectomy scar to prove it, along with some medical bills.

I don't mention it much, and now it's like it never even happened. I think I was in such a whirlwind when it happened that I couldn't really process it. Now that I have had time to exhale, I want to talk and ask questions and try to process. Everyone else has moved on and I get a lot of "it's in the past. Let's just not talk about it any more." Instead of "if we ignore it, maybe it will go away," it's a "if we don't talk about it, then maybe it never happened." Everyone has reached "I don't want to talk about it" with me now.

I don't know what kind of relationship you have with your mother in law, but maybe she is "trying" to be helpful in some odd way. Maybe she is worried and just wants to make sure you are in good hands. Once you have your plan a little more underway, maybe IF you can stand it- invite her to come along with you to an appointment where it's mostly sharing of information. Or set up a Zoom meeting or something to impart news to all of your family at once when you get new information.

Best of luck with overbearing family members. I have learned to say "Listen. i know this is stressful for everyone wondering what will happen. Thank you so much for your concern." I thank them for "caring" and then do my own thing.

MarcieB

Several years back I was talking to an acquaintance whose daughter just experienced a still birth - which, of course, is tragic. I told this woman how sorry I was to hear of it and added that I knew how devastating it is to lose a child. She knew my son was a young adult when he died (of muscular dystrophy), and she responded by saying, "Oh, I know you lost your son, but it is ESPECIALLY hard when it's a baby."

From that moment I have come to accept that some people JUST DON'T KNOW. It doesn't mean they are bad, or mean (maybe thoughtless...?), they simply do not have anything to draw from when they speak to you. That is why this particular site is so important - we may all be dealing with different cancers and each of our experiences is unique, but we have a common ground here and there are days when we need the support of someone who *knows where we live.* - so to speak. ;-)

I let thoughtless remarks roll off of me now.

legaljen1969

@MarcieB. Even with our commonalities and shared experience of cancer, I find that there are so many differences. However, for the most part- on the subject of our diagnoses- most are very kind to each other here.
I am sorry to hear of the loss of your son. I have two friends who both lost children within months of each other. One lost her 2 year old son to a drowning in their backyard pool. The other lost her 24 year old son to addiction. It has been amazing to watch them comfort each other and come together over the loss of their children. Both knew the pain of losing a child. It didn't matter the age. Neither of them had a "my pain is worse than yours" attitude.
It can be so hard when you don't know what to say. Sometimes you think saying "something" even if it is the wrong thing is the "right" thing to do. Others say nothing at all, and the grieving person feels alone. I think the loss of a child must be one of the hardest things ever. There really are no "right" words.

legaljen1969

Okay, so back to cancer, what to say, what to ignore. My life is divided into BC and AD- Before Cancer and After Diagnosis. I hardly remember BC anymore. Never mind that BC takes up a much larger portion of my life than AD. There is just that line in the sand where we hear the word and get the diagnosis and we can never turn back.
It can be hard when you are trying yourself to control the flow of information. You are trying to determine who gets to know, how much they get to know, when they get to know. My mother said one of the strangest things to me. She said she had not told my brother because she didn't think it was her place to say anything. Meanwhile she had come to me with stories about her friends who had told her things to tell me about their cancer and their surgeries. I asked her how it was possible that she felt it was here place to tell half of her town about my cancer but thought it shouldn't be discussed with my brother.
Once someone knows about your cancer, it becomes part of their story too. They care about you. Some people know how to talk about things and others should zip it. Just know that most people are trying to help and not hurt you.
When it feels like too much, we are here.

Dina

I have have to add some levity here: about 5 yrs ago, just after my active treatment had ended, I was at brunch with my husband's family. No one in that family acknowledges much about my cancer - it as always been the elephant in the room. At any rate, I had just finished up with a fundraising event for a local breast cancer organization, so my (truly sweet) father in law's girlfriend was asking me about the event. Then, completely out of the blue, my brother in law, who I was sitting next to, blurted out" "I KNOW WHY THERE IS SO MUCH BREAST CANCER IN MARIN - IT'S IN THE ROCKS!' Boy could I have had a field day with him, but decided it wasn't worth it. This guy is actually an intelligent man. I just turned to the person sitting to my other side and started up a new conversation.

Bengal

The only thing I have gotten that stands out is people looking at me with a quizzical frown and saying, " but you're all done with treatments, right? ". In other words, if I'm done with treatment, isn't it over, aren't I well, why haven't I returned to my old self? A lot of people, who haven't been through it themselves, have no clue that membership to the club is lifetime. There are lingering side effects from chemo, from radiation, from invasive surgeries, from medication, from trauma. I usually just reply it's the medication I'm taking or still dealing with side effects. I have been diagnosed with PTSD. Hard to explain to non club members.

legaljen1969

@Bengal, I know that feeling. It's like "Well you're done with treatments, so you're done with cancer." It's hard to explain a chronic disease for which you are not on a lifelong continuous treatment regimen. The treatment cycles come and go. I can completely see where someone would be diagnosed with PTSD when they are fighting cancer. You are so right, it's hard to explain to non-club members.

LiveWithCancer

Reading people's stories reminds me of going to church with an agility friend. She knew I had cancer, but I guess she thought I was past it or something. Not sure what she thought. Anyway, another friend, a girl who also had cancer, was coming to church, too. My friend said to me, "Now, be careful what you say to her. She has stage IV cancer." Even today, several years later, I kind of shake my head at that. I sat there and thought about it for a few minutes, then I asked, "You know I have stage IV lung cancer, right?" I can't remember the girl's name who had cancer or even what kind she had now, but I remember we enjoyed one another's company. She was in an interesting clinical trial that was measuring the effect of exercise on cancer. I've often wondered how that came out.

legaljen1969

@LiveWithCancer- people say the strangest things. Maybe you were doing so well she just forgot you had cancer? People say to me all the time "You don't look or act like you have cancer." I keep wondering how I am supposed to look and act.

LiveWithCancer

@legaljen1969 - sick and skeletal

I have never "looked" sick through this whole experience either and hopefully, I have rarely acted sick either. My #1 goal back when I was first diagnosed was to NOT let cancer rob me of living what life I had left ... and that has remained my #1 goal!!!

After my first oncologist finished delivering the news that I had stage IV lung cancer with a terrible prognosis and few options (well, one option -chemotherapy), he asked if I had any questions. My one and only question to him was, "Can I keep playing agility with my dogs?" It really took him back since he expected questions about the disease, etc. ... but all I wanted to know was, "Can I keep living my life?"

petieagnor

I've had MBC for 5 years now. Some people are jerks others truly care. I try to each person an appropriate answer. Most people have no clue that with Mets you are constantly going through something. I got tired of educating people. Sometimes, "I'm fine" does it.